Little things that make it real

Belle

DH was diagnosed in June 2022 and it's taken me a year to wrap my head around what exactly is wrong with his brain. It's been hard since his doctors will not use the word "dementia" in their discussions with me. Finally a family member who is a doctor took the time to talk to me about what exactly is going on ...VaD or mixed alz and VaD. It's been painfully sinking into my brain that this has been going on a long time. Last week I found a note in my phone from 2017 over how confused he was painting the house and how he was leaving outside doors open and going to bed for the night. But a small thing happened yesterday that felt like a gut punch for some reason. He was trying to put dishes in the dishwasher and couldn't figure out if it was on or off. He asked me if the red light meant that it was on. A very, very small thing but it hurt to hear him ask that question. We've had the same type of dishwasher for over a decade and he installed all of them. We see his neurologist this week and I am going to do a write up describing the issues I'm seeing. I hate everything about dementia not just for what it's doing to him but the impact on me too.

CindyBum

It’s so dang hard. Hugs to you.

The one that currently gets me is when my SO hands me the tv remote when I ask if she’s seen my phone.

mrahope

Or when my DH wakes up at 7:15 a.m. and asks me if it's night or morning.

jfkoc

....about the word dementia...My husband totally came unglued when he heard that word. It is difficult to hear and that may be the reason the Dr has not said "dementia" in front of your husband or even when talking to you alone.

While the road is steep and bumpy you will have us by your side. We will listen, support and share some solutions to smooth things out.

-Judith

SDianeL

Welcome. I know how you feel. The gut punches just keep coming. Don't be afraid to demand a diagnosis. He probably won't remember it anyway. My DH was diagnosed 2 years ago with Dementia possible vascular but they recently changed it to ALZ-Posterior Cortical Atrophy. Is he seeing a Neurologist? If so, call and speak to the doctor without your husband hearing and ask directly for a diagnosis. Make a list of his behaviors and give to the Neurologist. That helped them change my DH's diagnosis. Neurologist are only looking at brain scans and don't see any of the behaviors. They are only with the doctor a few minutes and there is no way the doctors can know about behaviors unless you tell them. My DH's PCP keeps making referrals for things and I think she forgets that he has ALZ. My DH can no longer use the phone, microwave, leaves cabinet doors open, gets lost at night going to the bathroom. He's now struggling with the TV channels & remote. This morning he had a meltdown because he wanted to watch Wonder Woman which came on at 11am and he was trying to watch it at 10:30. Here's a handout someone else posted here that you can use to document his behavior to help you communicate with his doctors: https://tala.org/wp-content/uploads/2019/04/Tam-Cummings-LLC-Handouts.pdf

Denise1847

Hi Belle, May I suggest that when you run the dishwasher or clothes washing machine that you tape a sign on the machines that says "please do not open." My DH doesn't know where the microwave is let alone use it, doesn't know where his phone is and needs a special "dementia phone." I put a luggage apple tracker in his wallet just in case. He usually messes up the remote so I just fix the programming when that happens. You just learn to adapt and make the best of the situation to help them maintain dignity and not get frustrated.

I am so sorry as the progression of the disease is horrible.

Ed1937

Belle, I've always said there are no small losses. Every one of them hurts, but I think in many cases the early losses are the things that cause us to embrace acceptance, and that's a very important thing to do.

Carmen M

We are all here to listen to your struggles. I am reading the book The 36 Hour Day which has been very helpful to understand behaviors.

Belle

Thank you for your kind responses. I am not ready to go through this again. Our other family member passed away just a few months before I started seeing that something was wrong with DH. At the time I started making notes about his issues but I was so busy with the other situation and then trying to catch up on everything that was neglected during that timeframe that I think I just wrote things off as one time issues. So this situation shouldn't be a shock to me. I will try some of the suggestions made here. I am re-reading the 36 hour day and I am already looking at MCF's. I probably will start another thread on issues I'm having with the VA around his diagnosis and treatment plan.